Funds raised will go to Kiwi and her family to use towards an activity or gift that enables Kiwi's recovery to be just a little bit better. Any contribution is welcome.
Collectively we lift each other!
Kiwi’s corageous story, told by Mom:
The morning of Nov. 18th Kiwi experienced a grand mal seizure and got to ride in an ambulance for the first time in her life. We stayed the day for observation but then went home with orders to follow-up with a neurologist. The next week we met with the neurologist and lots of questions came to light that led the doctor to order an EEG and an MRI in the following weeks. Her EEG should abnormal brain activity mostly on the left side of her brain but also on the right side. She immediately started being treated for seizures and they revoked her love of swimming. Her MRI followed a week later and showed no reason for her seizures but should another issue called Chiari Malformation. In simple terms her brain was falling through her spinal cord hole. She was no longer allowed to do physical activities and was high risk of paralysis or fatality if she were to fall and hit her head or neck. We were then referred to a Neurosurgeon. At this point it was January and with all of the snow and holidays we couldn't get in till the end of the month. At our appointment the Neurosurgeon confirmed the Chiari Malformation but noted it was more complex than they originally thought. On the other side of her spine was a bone called the odontoid that was falling and pushing on the spine as well so she was diagnosed with Chiari Malformation 1.5. Another MRI was ordered to check her full spine and any other issues that might be related to this condition. The MRI results came back and she had some fluid blockage in her spine and the amount of brain falling was worse than they originally thought but no other issues were seen. Surgery was the next step. May 3rd Kiwi was admitted to Doernbecher for her decompression surgery. They removed part of her skull, part of her brain and her 1st vertebrae. She was a champ just like the Unicorn she is. The next 6 weeks were rough for her because she wanted to be a kid and wasn’t allowed to do anything but walk and keep her two feet on the ground but it allowed her lots of time for her love of crafts. The day she was released for swimming we were at the pool and she was smiling and laughing and had a blast. We still had to wait for the 3 month mark for other activities to allow her body and muscles to continue to heal. July 31st she had her follow-up MRI and it showed her surgery was very successful. She could do all things kid again like play on playgrounds, go down slides, and all of her favorite activities. Her other problem remains and the doctor ordered physical therapy to help strengthen her neck in hopes the bone will not fall any further but we don’t have to go back for an MRI for a year. The news couldn’t have been better!
Kiwi is 7 years old and will be going into 2nd grade this year. Like many other kids she loves to be very active. She was doing swimming, gymnastics and horseback riding prior to her diagnosis and thank goodness now that she is cleared she will resume all in the fall. Kiwi also loves all things crafts. Drawing, painting, coloring, beads, sewing, creating her own inventions, you name it she loves it. Her favorite colors are light purple, light blue and pink but really loves all colors. Her favorite animals are unicorns, horses, hummingbirds, dolphins, and butterflies. At school her favorite subjects are math and writing. She always wants to help others and cares a lot about their feelings. To sum her up she is a really happy, silly and full of energy little girl with the biggest of hearts which is my favorite thing about her as her mom.
- Matt Schlanser
- Brittany Bode
- Jessie Opel
- Sara Betty
- Larry Warren
Organizer and beneficiary
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